Tales of a Terminal Mummy

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For a while now I’ve been keeping a big secret! Not just from you, but from most of my family and friends. As many of you know, I’m a terrible secret keeper. The very worst kind! So this one has been hard. And we aren’t talking about a few weeks hard. This is the longest secret I’ve kept in my life! There aren’t enough words to describe the excitement I feel in finally being able to share with you a project that has been in the making for over a year now. It’s a huge achievement in LyndseyLand, and a big tick off the bucket list.

I WROTE A BOOK!

This is ‘My Mummy has Cancer’ – a book for Nyah and children facing a journey like hers. It is our story, her story.

I didn’t write ‘My Mummy Has Cancer’ by myself. It has been the most wonderful collaboration between myself and my lifelong friends Laura and her husband Zane, and Bronwyn. When I say lifelong, I mean lifelong. I met these two ladies in Kindergarten and we have enjoyed an almost 24 year friendship ever since. We have had the incredible privilege of growing together and being each other’s bridesmaids. They also hold a special place in Nyah’s life as her Godmothers. Bron and Laura are incredibly loving, talented and generous women who have worked tirelessly to make this dream come true for me. It is such an honour to see our names together in print and add this to our friendship portfolio.

As I look back on the past year, I can’t help but know that this book was something we were meant to do. It’s no small affair, writing your own children’s book, illustrating, editing and publishing it. Yet for ‘My Mummy Has Cancer’, it just seemed to evolve naturally. It all started when I was first diagnosed and in hospital. The amazing teachers at the preschool I worked at were struggling to find age appropriate books to read to the kids who all knew about my illness and absence in varying degrees. It seemed like there was a lot for older children, but not much to support my little ones who were just starting to learn about life and death, and simply wondering about Mrs Clark. I too could find nothing for Nyah and remember thinking how much easier our little discussion about heaven would have been had we had a book to read. Heaven and connections with loved ones after death are very abstract concepts for such a tender age. Robyn, my beautiful colleague, made the suggestion that began it all…‘you need to write your own book’. I remember trying to throw the thought away when she first mentioned it, but it sat in the back of my mind for quite some time. It made sense. As a teacher I knew what made a good children’s book, and there seemed to be a real need here. I had a very strong urge to fill that gap, so that I could help a little one in the way that I couldn’t help Nyah. So, I decided to do it. I started to write our story, filling the many long hours sitting in the chemo chairs. With no internet service and not being able to hold a book due to cannulas, it was the best way for me to pass the time. My words are simple, things that Nyah has said or experienced herself. Sometimes though, these are the hardest words to write. I spent many, many hours mulling over this word and that to make sure it expressed exactly what I was hoping it would. I am so proud of the story we have captured. It is our personal journey, but also echo’s the journey of others touched by cancer. It is my hope that any child who faces a similar situation could pick up our book and find comfort in its words.

Once I’d finished my story, I remember showing Ben and Kirra. They told me that it was something special. My intention in those initial stages was to throw it together with some nice sketches and print two copies, one for Nyah and one for the preschool. Laura was my immediate thought when I considered illustrations. She has always been artistically gifted, with me the annoying friend that was always pestering her to draw me something. I have many of her beautiful sketches and drawings from across the years. Asking Bronwyn to edit and help me publish the book was also a natural extension. Bron had recently finished a graphic design course, has always had a wonderful way with words, and loves to create and organise. At our first ‘book meeting’ (at a little café on Darby Street) they read my story and emotionally jumped on board to make it happen for Nyah. We blocked out pages and talked about illustrations. A few weeks later, Laura sent me this:

And I knew. I knew that this wasn’t going to be some little home job like she and I used to do in primary school for fun. We were actually going to create something special. I think the fact that Bronwyn, Laura and I know each other’s hearts so well made the task all the more easier. When we first talked about the pictures being imperfect, raw and light, I imagined what they would be. Yet when Laura sent me that first sketch, it surpassed anything I ever expected. Her pictures are breathtaking. She pulled them straight from my head and heart, and beautifully captured our family (yet somehow made it everyone else’s family too). She has personalised so much; Dr N’s broach, my hair, Nyah, – and Dear Reader, I think you will agree that they are something special. Once we had all the sketches, Laura’s husband Zane digitally coloured them. He is an incredibly gifted tattooist and artist. I love how he has used colour to enhance the pictures – how light, soft and pretty they are. Once again this was a case of the actual end result surpassing anything I could have imagined. Nyah has a special page inside too. You’ll get a glimpse of what her heaven looks like in a beautiful illustration that features me in a crown with pigtails. It’s pretty special. The pictures are the perfect extension of my words and I hope you enjoy them as much as I do.

Once we had all our illustrations, Bronwyn worked her magic and actually pieced everything together. She has worked tirelessly in the background emailing, coordinating with the printer and organising everything so that purchasing, printing and postage runs smoothly. She has been the one to turn it from just a few (amazing!) words and pictures, into a proper, professional children’s book, just like any other you would find in the store. Better actually. I remember being again surprised when she sent me the first layout thinking ‘this is actually a book!!!’. I think it was at this stage that I began to hope for more – to think that perhaps this was something we could actually get published, and that it may make a difference for many children rather than just those in LyndseyLand. We tried sending out the text to a couple of publishers but didn’t really get any response or feedback. So we decided that we would just publish it ourselves and then continue to send it round to publishing companies as a complete package. We chose the cute little rectangular hardcover, perfect for little hands, and ordered our very first copy! This was a fairly epic moment, but actually holding it in my hands and seeing our dream become a reality is a moment I will never forget. You never saw a bigger tick against a bucket list dream. I couldn’t help myself, I had to show a few people. I couldn’t keep it in any longer and the feedback has been so wonderful. Already, so many people have pre-booked copies and I hope that it does get picked up and published one day. BUT, if it only ever makes it as far as my bookshelf and the preschool’s, I’m happy. I’m so proud of what we have achieved. I feel like Mufasa in the Lion King, holding up our book and shouting to the world, “WE MADE THIS”. Already it has achieved what I hoped for Nyah. I read it to her and she couldn’t quite get over the fact that HER picture and name was in a book. We had a great chat about heaven and death and it gave her the words to voice some of the anxieties she has been struggling with of late. She spent the afternoon snuggling in bed, reading it quietly to herself and pouring over the pictures, picking out and noticing all the little personalisation’s and things from her life.

From the moment we started, I never wanted to make money from our story. Our focus was always on helping children better understand the journey of terminal cancer. To give them thespace to explore the emotions behind loosing a loved one and the more abstract thoughts of heaven and love after death. We searched for quite some time for a charity to donate all the profits to. I was quite specific in wanting one that was focused on supporting the whole family. I was tickled pink to learn of the OTIS Foundation – a Victoria / New South Wales based charity that provides no cost retreat escapes for families affected by breast cancer. These escapes are priceless. I know the impact that such a gift can have on families, when there isn’t much to look forward to, and the stress of caring for a loved one becomes overwhelming. As soon as I chatted with the lovely women who run the foundation and showed them our book, I knew we had found the right place for our money. The printer kindly offered to print our book for $12, and we’ve decided to sell it for $20. That means that $8 from the sale of every book will be donated to the OTIS Foundation in Nyah’s name. Gosh I’m proud of this. So proud. It truly is wonderful to think that I will leave this legacy, and that Nyah is already experiencing the importance of giving. If you choose to purchase our book, know that your money will make a big difference. A while ago now, some beautiful new friends gifted us some money. I chose to keep it aside and will use it to print extra copies and donate them to a few special people including the preschool, the school, my doctor and the hospital. I cannot wait to proudly hand them over.

So Dear Reader, the only thing left to say is please consider supporting us by buying a copy of ‘My Mummy Has Cancer’.

I truly hope that you never have to read this to a young one because you’re facing the same journey as us. But if you do, I hope it provides you with comfort, hope and love, and makes that awful conversation about death just that little bit easier.

“I’m going to discharge myself from palliative care!” were my excited words to my best friend Kirra just a few weeks ago. I discovered this was an option after reading a blog post from a fellow young terminal cancer sufferer. She discharged herself after responding well to a new treatment, and like me needed no extra support to manage life with her terminal illness. You can find her blog here: http://www.dearmelanoma.com/.

I haven’t actually had much to do with the palliative care team, though I’m sure they’re awesome. Despite this, I HATE being under the palliative care umbrella. HATE IT. For me, it screams ‘YOU ARE GOING TO DIE SOON’ and doesn’t match what my life looks like. Everyone assures me that they aren’t just there for the death part, more so pain management and support in leading as normal a life as possible. But I can’t help but see it as something I want nothing to do with. The kind of pain they manage, because my doctor no longer can or isn’t involved in my treatment anymore, usually means death is fairly imminent. One night, not long after I was discharged, a lovely palliative care doctor came to talk to us about death, about what to do when I die; if it’s at night, in bed, etc. It was one of the most confronting conversations I have ever had and I don’t remember much about it. They called me a couple of times after and I was quick to tell them how fine I was. Last phone call, I politely said I would call them when I need them. So when Kirra and I were chatting, she ever so gently reminded me that it’s been no biggie having them linked in and I should probably just kept it that way so when I need them everything is ready to go. But I was pretty adamant. They can disappear for a while! And why not? Everything in LyndseyLand has been ticking along smashingly. I’ve been well and active and tolerating chemo so well that my doctor decided to take away my breaks and hit me a bit harder. We all know that in LyndseyLand, more chemo= more time, so this was a winner in our eyes! Surely I wouldn’t need palliative care for aggggeesss yet?! I hear you asking, Dear Reader, so why is it a big deal? I don’t really have an answer for you except to say that I suspect that it’s really just another way for me to avoid the fact that I am actually dying. I don’t want to be dying and certainly don’t want to be labelled as such.

A few days later I was hit with that stinky, week old trout of a reality check. A nasty fever and some pain took me into ED and meant another stay with my friends up on ward 5B. I remember two of my closest friends, Kirra and Laura, feeling very melancholy about me being in hospital again. We texted late at night and they couldn’t explain why everything didn’t feel right this time. I brushed it off assuring them I was fine. Every other time that I wasn’t fine, I knew within myself well in advance. Plus, I was already feeling much better and pretty positive that it would be a quick stay. I was wrong. Boy was I wrong! A routine CT scan to check the cause of my pain lit up like a firecracker. One nasty spot on my T6 vertebrae meant so much more than what I was prepared to hear. My cancer had moved into my bones and established itself there quite comfortably. And where there’s one, there’s bound to be more. More tests found them easily enough. Another one on my T3 vertebrae and ninth rib. I remember my doctor breaking the news to me. It was the first time I’d heard bad news alone and it destroyed Mum that she wasn’t there to hold my hand (as she has through every other bump in the road). I felt numb and terrified. Was this finally it? The beginning of the great decline? I felt as though I was standing at the top of a huge, rocky mountain that I’ve been hiking up for a long time. All of a sudden, in that moment, I reached the top and a segway appeared underneath my feet. I began to speed back down the other side, wobbling about and loosing all control. We all know I’m not the most coordinated tool on the shelf, and I didn’t even have time to put on my helmet or catch a second to enjoy the view.

My doctor was quick to assure me that these new tumours in my bones shouldn’t shave away too much time. She was, however, honest in admitting it could really impact on my quality of life, especially as it continues to travel to the bones I need to weight bear. Apparently bone cancer typically spreads quickly and can get pretty painful and nasty. I will have radiation treatment to blast the suckers when this starts, and have started a new treatment to try and strengthen my bones and slow down the growth and spread. This has been a big contributor to what has been a month of hell. My body hates it. I’m currently writing from a hospital chair after my second dose of the drug so innocently named ‘Zometa’. My second episode of near 40 degree temperatures, hallucinations, pain, low blood pressure, dehydration, vomiting, and so much more you really don’t want to know. This is a big deal when you can’t take Panadol or Nurofen to settle it all down. I have to ride it all out with fluids and rest and lots of pain relief. I was also wrongly prescribed a nasty fluid tablet that did some big damage. Severe muscle weakness in my legs to the point of having falls and needing the walker again, terrible leg cramps that would see me wake screaming in the middle of the night, crappy kidney function that almost stopped chemo, severe fatigue, low blood minerals, etc. And all of this just before our Christmas/ New Year month. So life at the moment has been a whole bundle of hard. Hard for me, but even harder for Nyah who has watched her mum pretty much disappear. Thankfully, Ben has been on holidays and has distracted and shielded her a bit. I’m terrified of how different our days will look when he heads back to work and I need to stay awake for more than 4 hours at a time, and continue to try and fill her life with the happiness and new experiences that all 6 year olds deserve. Previously our school holidays have been rich and active. These days I can’t even take her to the pool because I can’t even get in and out of the sucker. So, you could say that dying has been front of mind lately. I’m not ready. I’m not ready to die and I’m not ready to be as sick as I am quickly becoming. I feel that I have transitioned into a new cancer phase. I was in the #ihaveterminalcancerbutimsmashingtheoddsandlivinganormallife phase. During this phase, my experience was to fight and gain. Fight hard and gain energy, strength and independence. I could work with that. The hard days were okay and fight was worth it because boy did I gain. These days though, I am just living in the #ihaveterminalcancer phase. The one where I’m just always fighting, fighting so hard, but my cancer is stronger than a brick shithouse. It’s been a long time since I’ve won any kind of battle and I’m so very tired.

I spend a lot of time thinking about what it will be like to die. Will it hurt? Be quick? Will I know that’s what’s happening? I often wonder, will there be someone there? Perhaps a passed family member that is standing in the corner and comes forward to take me somewhere? I think this is the thing that troubles me most about dying. I’m pretty sure it won’t hurt but I’m truly terrified of doing it alone. Throughout my whole life, I’ve never had to do anything alone. My Dad and Mum spoiled me terribly and held my hand while I faced every hurdle. They could fix anything. Then I got lucky enough to find Ben who treated me the same way. For some time now, I have been carried by the three of them, wrapped up in a happy little bubble. Every choice and movement I have ever made has been made with their blessing, advice and support. I wouldn’t have it any other way. We have tried so hard to parent Nyah in the same fashion, so that she can navigate through life simply knowing that we will always be her safe place. That no matter what she does, we will love her unconditionally and be there to support her. So this whole dying thing is not only the biggest thing ill ever have to face, it’s the first thing I’ll ever really have to do alone. In my deepest darkest thoughts, in those barely wakeful hours, I’ve caught myself wishing I could just take Ben and Nyah with me. Not because I want them to die, but because I never want to be without them. Of course, the horror of those thoughts quickly takes over and I realise what the heck I’m thinking. But, it is my sincerest hope that somewhere along the line, there will be someone there to hold my sweaty hand, lead me along whatever path one walks along into death, and tell me it will be okay.

One night soon after I came out of hospital, I think I almost did die. I remember lying in the hospital bed with Ben and Nyah fast asleep beside me. I was feeling really funny, kind of out of body, then all of a sudden it felt as if I was lifting off the bed. I can’t find the words to describe the feeling. It wasn’t pain medication induced and it’s something I hadn’t experienced before or am yet to again. I gripped the bed so hard and willed myself to stop and come back. I remember feeling quite peaceful up until I felt my body lifting, then sheer panic set in when I realised what was happening. I get the worst case of shivers whenever I recall this experience and that feeling of calm and peace. I have often heard nurses and doctors describe death as peaceful. That there is a chemical in the brain that takes over and makes it all okay.

I also spend a lot of time lately questioning my faith and beliefs. I started going to church and developing my knowledge of religion, specifically Christianity. I was not raised in a religious household, but everyone was very supportive of my choice to explore this. I admit, I started going because I was scared. Death is the great unknown and it is scary. So, I desperately searched for peace and something to ease the fear. I wanted to believe. I wanted to believe so bad that there is a heaven and that Jesus will meet me there. That I will rest in some kind of beautiful infinity, happy and whole. And I almost got there you know. But then one night, my faith was shattered by a single thought. And I just can’t regather the pieces. I was lying in bed, thinking about how much I want for Ben ‘after’. How I want him to be a husband again and find love and happiness. I almost feel the need to somehow start canvassing for him just to make sure he does, because boy does he sure know how to be a husband. The very best. So there I was wondering what it will be like to sit in heaven and watch him love another, still loving him myself and waiting for him to join me when it’s his time. And then it hit me, so violently that I actually spewed. What if he doesn’t want me anymore? Chances are, his next great love will be longer and therefore stronger and deeper than ours. I love him more every day, minute, second. So of course, if he grows old with another their love will be strong. I want that for him. I truly do. He deserves this and will give back nothing less in return. But when the time comes, and he walks through the pearly gates, who gets him? What if there are two of us waiting and he loves her more? I want him. He is mine. I was kind of okay with the thought that he will find love again, because I’d just always assumed we would be together again in the end. But really, when you think about it, that probably won’t be the case. So that was the moment my faith came crumbling down. Like I said, I tried to pick it back up. I asked a lot of questions to my little church community and Christian friends to get some answers. This actually made it worse. According to the bible, in heaven these relationships will no longer be of any significance. We won’t feel these connections and intense love anymore. We won’t have these labels or relationships. I think it is this that I hate the most. Because I don’t know who I am without my love for Ben and Nyah. My connections with them define my very soul. These connections are, in my mind, unbreakable through time, death and space. I do not want to reside in any kind of place that doesn’t maintain this in a tangible way. My idea of heaven was that I’d head up and watch. Watch my baby grow and live life alongside her, experiencing the full force of all those wonderful emotions mothers feel and sharing in her joys, successes and failures (just from a place she can’t see). So you can see my problem. I can’t possibly believe in this Christian version of heaven anymore because I’m not willing to compromise on my beliefs about my infinite love for my family. I wish I’d known what the bible says about heaven earlier. It was an awful shock. I continued to go to church for a few weeks after these awful realisations, but felt like a big fat phoney. I was terrified, however, that if I stopped going God would strike me down in some way. I hear you laughing at that Dear Reader, but I have cancer and I don’t want to mess with ANYTHING that could even remotely impact negatively on my life or time. I do feel sad that we aren’t an active part of that little church community any longer though. There is something to be said about people with faith. They are incredibly kind, generous, warm, loving and just genuinely good people. Their prayers were piled onto our little family in abundance and it’s my hope that Nyah will possess all these qualities as she grows. As for where I’m headed, I’ve decided that I do still believe in heaven, just my version. The one where I get beautiful angel wings and ride the rainbows and stars, all the while sharing in the lives of my loved ones. It’s a truly beautiful place.

There has been a lot of chatter lately about dying with dignity after the beautiful Brittany Manyard chose to end her life on her terms using a euthanasia drug only available to terminal patients in five US states at that time. (You can find her story here, http://thebrittanyfund.org/) People have asked for my thoughts on this as I face the same situation. We all know how cancer ends, and as I’ve said before it’s NEVER pretty. My cancer will eat me alive from the inside out. I will most likely end up in a hospice on palliative sedation which I understand to be the slow starvation and dehydration of my body comfortably through the use of pain medication, etc. So would I take the drug and choose when to end my life? Heck yes I would. In a heartbeat. Not for me though. For Nyah, for Ben, for my whole family. I don’t want Nyah’s last memories of me to be in a hospice, lying on a bed and wasting away, incoherent. It is my request that when this time arrives, she be told that I have already passed. I so desperately want her memories of me to be of a vibrant, whole Mummy. I also don’t want Ben or my family to have to sit at my bedside while I slowly fade away. Thinking at every turn ’is this the moment?’, then possibly facing a guilty kind of relief when I finally pass, because it will have been a truly traumatic experience. I would actually give anything not to be anywhere near the hospice. My home is my happy place. Ideally I would like to remain comfortable there. I’ve had many people tell me this is actually possible but again, what if Nyah came in one night or early morning for a cuddle (as she often does) and I was gone? I could never place that on her little heart. Never in a million years. The palliative sedation phase is easier to hide from her in the hospice. So yes, I am a huge champion for this drug. HUGE. I sure know I’d have a lot more peace if I could be guaranteed that my actual palliative stage was to be quick and painless for everyone. If I had access to the drug, my choice would be simple. I would wait until the very end. Until I couldn’t hold out on those pain meds anymore. I’m talking about the big stuff that actually takes you from being a person to a vegetable lying in the bed. I would read my daughter a bedtime story, try to express how much I loved her, say goodnight and let her fall asleep snuggled in my arms. I would then add my husband and puppies into the mix, take the tablet and simply fall asleep myself, wrapped in his arms. This is my happy place and this is how I want to die (of course Nyah would be moved after!). I’m the first to admit that I am the most politically naive person to ever walk the face of this earth, but I’m just not sure how there could ever be anything wrong with helping people die in the way they want to if death is imminent anyway.

I haven’t actually planned my funeral. Those who know me will find this very strange, considering I plan and control every inch of my life, down to the finest detail. I’m sure that you, Dear Reader, are quickly realising this too. Mum and I had a laugh about it during our last stint in hospital. I threw it out there that I don’t really mind what they do, but that I have a list of songs that I love and may be nice. I think she half expected me to pull out a detailed list, noting colour scheme, flowers, order of service, etc. Okay, I admit, this is more my style, BUT really I actually don’t care. As long as it’s not boring and long, and as long as everyone wears bright colours and flower crowns, I’m cool. I’d like to be cremated and rest in a nice spot under a beautiful old rose bush. One of those ones that still smells like a rose. It is my hope that Nyah, Ben and my family won’t feel the need to ‘visit’ me there too often. Mum and Dad bought me a star for Christmas so I hope that Nyah can feel our connection and access me whenever she needs as the stars appear each night. I wish that I could donate my organs. This is something I have always felt very strongly about. What a wonderful thing it would be, to give capability or life to another in your passing. There probably wont be much left that’s good in my body in the end anyway, but I hate that cancer has stolen this from me too.

When I was first diagnosed, we received a lot of advice on guardianship and power of attorney. It was suggested that I sign over all legal rights to Ben so that he was able to make decisions on my behalf and control finances, etc. It was hard learning that my liver could end up making me quite confused and incoherent. There will never be enough words to describe the anger this arose in me; the horror, embarrassment and indignity at the thought of no longer being me and of not being able to make legal choices anymore. Despite this, Noah’s ark would have floated again before I signed on that dotted line. Again, I hear you ask Dear Reader, what’s the big deal? Ben is my husband and has always and will always make the right choices for me and our family. I trust him with every fibre of my being. BUT, I want to die with my own power of attorney firmly attached. As Lyndsey. Another label that cancer is trying to steal as it strips me bare. I’m holding firmly onto this one though, and it’s comforting to know that even without power of attorney, when I no longer can, Ben gets to make all those decisions anyway. I know he will make those tough choices about my end of life in consultation with my family and my wishes.

So, I guess for now, I keep my links with the palliative care team and I give in a little. Give in to the knowledge that yes, I am riding the segway down mountain. And yes, the start of my great decline has begun. I know, however, that there are lots of people jogging beside me and helping me steer around the bumps and slow me down. I’m going to change the nature of my fight. It definitely doesn’t mean I’ll stop, because I can assure you that I’ll continue to fight to the very end. But I think I need to change my expectations. I’m not Lyndsey living a normal life with terminal cancer anymore. I am simply Lyndsey who is sick, and I need to accept this as my new normal. I will never again be a fully functioning mother, wife or person. I need help to be all three, though if I could have one wish, it would be that I could hold on to being the mother that I was until the very end. As I write this, I cannot breathe for the heartache I feel for my beautiful Nyah Joy. I simply cannot expect that my terribly broken body will continue to achieve the things it has in the past year. I get incredibly mad at it when it doesn’t and fails me in the worse ways. It is too heavy and exhausting and I am so tired. As I look back on the past year, I actually wonder how the heck I managed to do half the things I did, and can’t help but feel grateful for that.

The subject of dying is a heavy one Dear Reader, but one I think we need to talk about more. I mean, we’re all headed there one way or another. If you’ve actually made it to the end of this post, I want to thank you for sharing in this hard with me. At the end of the day, no one will ever know what our journey will look like into death. There is one thing that I am very certain of though. If there is even the slightest way that it’s possible, I will be there, ready and waiting to hold your hand.

We have all read them. Those lists entitled “10 things to never say to a Cancer patient” (or something along those lines). I’ve shared many on Facebook myself. They are a great and often a terrible reminder that we are so ill equipped to support a loved one through their cancer journey. I myself have said many of these to others, as most are really just natural, automatic, human responses. You search for something to say to protect your own hurt. Something that makes you feel a little better and makes facing the hard a little easier.

These are my own additions to those lists and yes Dear Reader, some of them have probably come from you. Remember when I promised you I’d be honest? Please don’t read this blog and search or mull over whether or not at some stage you have ‘said this’ or ‘done that’. Or that I was upset or angry at you for a second. I have been so lucky this past year to be surrounded by love and so many that have encouraged and supported me with kind words. I know how hard you try to find some way to make it right. The aim of this blog post is not to shame, but rather, may help you think twice when offering love to someone with cancer. I would never have thought of any of this pre-cancer, so really we are all on this journey together.

WHEN DOES YOUR TREATMENT FINISH?

I am really struggling with this question at the moment. Funnily enough, I don’t just get it from friends and family, but also from health professionals like the radiographers who do my scans, pharmacists organising meds or even ED doctors. “So when will you be finished treatment?” is almost always asked and definitely always leaves me completely and utterly at a loss to answer appropriately. Because how do you appropriately say “when I die” in a way that doesn’t make the person asking feel like utter crap? I usually stutter around a bit and then say “I have a terminal diagnosis so I’ll never really stop”. I feel for these guys every time. I watch them struggle to find the right words, and sometimes can’t help the tears that pop up because I wish they didn’t have to. I admit it, once I lied and said “I only have 5 treatments left” with a big smile. That was much easier! I get it though. The success rate for cancer treatment these days is great and when you combine that with someone that is as young and (semi) healthy looking as me, you don’t readily assume that I’m one of the unlucky few. Try the question, “how is your treatment going?” instead.

YOU CAN BEAT THIS. MIRACLES HAPPEN…….

No. No I won’t and no they do not. No one has ever been cured from stage IV metastatic breast cancer. There is no cure…yet. Dear Reader, every time you say this to me, it’s a pretty awful reminder that I’m going to die. Then I then have to come up with some form of response that explains all of the above, even though you really already know this. Or, should I agree and then start to open the doors of hope that I might beat cancer? I actually battle daily with these thoughts of hope, often finding myself thinking that maybe I will be the miracle you read about in the paper. This is a very, very dangerous and unhealthy pastime and I am thankful that for the most part, I’m realistic about my journey and end. Don’t get me wrong, I do live everyday with hope, but its hope for more time, not a cure. This I know to be possible and achievable. The other kind of hope can do a lot of damage because cancer has a sneaky way of slapping you in the face with reality whether you like it or not. It’s already a long way to fall when your faced with hospital admissions, pain, hair loss and everything else cancer does to you and your life. It strips you bare in sometimes the smallest of ways, yet these sometimes hurt the most. Kind of like a paper cut. I can’t imagine how much harder battling through these would be, if I was pretending like it wasn’t going to happen or that it would end soon. I think part of the reason why I have faced cancer so well is that I knew most of the symptoms were coming and had a plan. You can, Dear Reader, easily live in denial, and why shouldn’t you? In no way do I want you to shoulder the weight cancer has placed upon my shoulders, but it does make me feel like I have failed you. Because I wasn’t strong enough to get the good, curable kind of cancer and eventually, I am going to die.

YOU’LL BE DIFFERENT….

Often, when I voice my fears about dying and the awful decline that is inevitable with terminal cancer, people try to suggest that I’ll be different. That it won’t happen to me. That I won’t be the one lying in the hospice, jacked up on morphine for weeks before I die, again having my butt wiped for me. I just want to scream whenever I hear it and tell you, Dear Reader, to stop lying to me. Deep down, we all know the truth and I need to face it with my big girl panties on, firmly pulled up to my waist. Again, creating a false sense of hope around dying with dignity is a dangerous sport. It’s not something I am likely to experience, and it’s going to be hard enough without it slapping me in the face because I wasn’t ready or accepting of it. With the help of my therapist, I have realised I’ll never be okay with how I am going to die and that I have no control over it. It doesn’t make it any less frightening though, and I often need to just talk about it and run through all the ‘what if’s’, otherwise they eat my brain alive. When getting into these conversations with someone who has cancer, be very careful of trying to find silver linings for minor things, because they again tend to be laughable when compared to the actual issue, and can quickly bring up the anger of the sheer injustice of it all.

I KNOW HOW TO CURE YOU! DRINK CARROT JUICE….

True story. Someone actually did send me this information with a whole write up on how drinking carrot juice would cure my cancer. It was sent with such beautiful intentions, but I’m going to admit, I didn’t read it. Lots of people have sent me great info on natural cancer cures, and not just me, to my whole family. I replied and gave them my thanks, letting them know I would get straight onto it. I lied. I’m a big fat liar. What I really did was delete them straight away and eat a cookie. Don’t get me wrong, I love a good carrot. But if I’ve only got 3 months left to live, I’m going to eat my way through the confectionary isle at Coles. Then the pastry isle, then the icecream freezers…you get my drift. To be honest with you, the only person in which I will ever place my faith is my oncologist. If she told me to drink distilled bat blood because it would help with my treatment, I would. Thankfully, she doesn’t, and actually encourages me to go stuff my face with whatever the heck I want. Even now with my new diabetes status. Her comment to the specialist when they first realised I had diabetes was, “this is a woman that likes to share a meal with her daughter and we must not change that. We will just give her more insulin”. I’m lucky that I actually have a huge love affair with most healthy foods and have a pretty great diet. I just like to balance this out with the unhealthy stuff at midnight! So if you, Dear Reader, ever come across information such as ‘drinking carrot juice will cure cancer’, I encourage you to pass it on to your local oncologist first and let them share it with their patients (because I know I don’t stand alone in feeling this way).

IF YOU DON’T PASS THIS ON TO 5 FRIENDS IN THE NEXT 5 MINUTES YOU WILL DIE……

Ahh, chain mail. I’m not sure I know anyone who actually likes it or believes in it, yet somehow my inbox seems to be full of it. Don’t get me wrong, Dear Reader, I know why you send it. You send those sweet poems about how I’m a good mum or woman, and you want to remind me of that and make me happy. But all I see is that last line that says, “If you don’t pass this to 5 women in 5 minutes you are going to die”. When you really think about it, it’s pretty darn insensitive to belittle death in such a way to someone who is actually facing it for real. Or even bad/good luck – I think I’ve had enough bad luck to last me a lifetime thank you very much! Please, please think twice before sending chain mail to one with cancer. What seems like a fun ‘game’ can really sting.

I FOUND A LUMP BUT IM TOO SCARED TO GET IT CHECKED OUT……

This has actually happened a couple of times to me lately, where friends have felt like they have no one else to talk to, and that I’ll give the best guidance because I can ‘relate’. Problem is, I can’t and I’m not. I can’t relate because I never had a lump. I never had the opportunity to make an appointment to get checked. That could have saved my life. I’m not the best person to talk to about this because my answer is probably not going to be the nice, gentle, supportive one you want to hear. Rather, it will more likely be a big kick up the butt with a not so gentle reminder that this one of those moments where you need to put on your big girl panties… That there are people dying of cancer every single day… That I would give anything to have had the opportunity to find my cancer earlier. For me, it’s a no brainer. You have a lump, you get it checked out, yesterday. A friend recently said to me that she was too scared to have her lump checked because she wasn’t as strong as me. Don’t be fooled. I’m in no way strong because I want to be or it comes easily. It’s just that given the choice of being strong, or laying down on the floor in the foetal position singing Whitney Houston songs all day, I choose the former, for Nyah. If it was just me and hubby, I’m pretty sure that Whitney would reign. My point is, if you’re struggling with this, try and find encouragement and support from someone that’s not currently dying from the very thing you could very well prevent. Early detection of all cancers, especially breast cancer, is key. It can mean the difference between a terminal or curable diagnosis. And let me tell you, Dear Reader, that is a huge difference.

LET’S CATCH UP…..

I struggled a lot with this in the early days of my diagnosis. I was facing a bit of celebrity status. Once again, I think a really normal response to tragedy is to reach out. To try and offer support and love in an attempt to do whatever you can to help. It’s a beautiful thing to see so many people moved into action, and to this day I still wonder what I did to deserve such love from every turn. Because of this though, people I haven’t seen for many, many, many years (we are talking at least 10!) years wanted to ‘catch up’. Whilst it was amazing that so many people were thinking of me, it was equally as tough. I knew that the only reason they wanted to see me was because I had cancer and was going to die soon, not because they sought my friendship and valued me as a person… as ‘Lyndsey’ who has many different qualities and things to offer. Had that of been the case, we would have been in each others lives long before the cancer arrived. When I first told the world via Facebook that I had terminal cancer, I was stuck in the hospital with no service. When I finally found some, I had over 40 friend requests. I know, Dear Reader, you wanted to know what was going on, and perhaps leave me a message of support. But it made me feel as if the only worth I had was cancer. Let’s not forget that cancer stole everything, so I was already only defined by that anyway. To then find out that because I had cancer, suddenly a thousand people liked me, were commenting on how wonderful a person I was (though they hadn’t seen me for years and didn’t know me), were talking about our wonderful friendship that actually fizzled out after school, and were even saying that they loved me made me feel empty, worthless and angry to be truthful. Because some of these people were nasty to me once upon a time, yet now I deserved their respect and kindness because I had cancer, not because of the other qualities that make up Lyndsey that were there all along. Had I never got cancer, we probably would not have seen each other for the rest of our lives. Don’t get me wrong, I was totally cool with that. If you haven’t seen someone in that long, then chances are you don’t have much in common that would allow you to maintain a close friendship anyway.

A few times I ended up having to ‘catch up’ with these friends and to be honest, it caused me a great deal of anxiety. Because once we got over the general ‘what have you been doing in the last 10 years’ chat, the only thing left to talk about is cancer. And no offence Dear Reader, if I haven’t seen you in 10 years then I don’t want to bare my soul to you, cry in front of you, or let you know how I’m really doing. If I passed you in the shops and you asked me how I was, my response would be ’I’m fine‘ and then I would deflect and move the conversation on. But I can’t do that when you’re sitting in my lounge room or are at my front door, crying about how shitty it is that I have cancer. Don’t get me wrong. I appreciate this. Truly I do. It’s beautiful and genuine, but I have a hard enough time holding myself together, let alone trying to comfort you too. I have been guilty of finding a ‘cancer buffer’. Forcing one of my friends to stay and pretend they just ‘dropped in’ too, so that I had some way to deflect the attention from me and cancer. I actually feel like a bit of a genius for coming up with this strategy!

Once again, I think in these situations it is often more about you than me. You needing to feel as if you have done a good deed and helped in some way. As time passes, those that were there to have a sticky beak have naturally drifted away, and friends that were there before cancer are still there in the exact same capacity now. I am so lucky to have a very close group of amazing friends that have been my constant, unwavering support. My advice to you is, if you want to reach out and offer support or reconnect with someone facing a cancer diagnosis, do so via text or email and let them direct the way your relationship evolves. That way they can be free to share and expose their feelings and thoughts in their own time in a way that is comfortable for them.

MY FRIENDS SISTERS, AUNTY DIED FROM BREAST CANCER….

I think when attempting to offer support, we often try to find common ground. Like if you can relate then you are better equipped to empathise and sympathise. You want your friend to know that you understand what they’re going through, and that they are safe to talk to you about it. So you pull out the story. The story I have heard a thousand times over. The one about your friend’s sister that had breast cancer and fought for 2 years and then died. And I know you feel that you are giving me hope, because she survived for 2 years, but all that echo’s through my head is that SHE DIED! I will be this person one day. The one people talk about to give others hope for more time. And I don’t want to be, because I died. But also because for however long I fought, it will never be enough. Hearing that someone survived for 2 years doesn’t make me feel better. Quite the opposite. Because I want 20…40…60 years. These stories are also often accompanied by a look or more details that describe how awful it was in the end. Cancer never ends nicely. I think I can speak freely for all terminal cancer patients when I say that we spend a lot of time thinking about death. Often, hearing these stories is comparable to getting slapped across the face with a week old trout. It stinks, and is an awful reminder when maybe you were having a moments break because your friend is here, and you are just Lyndsey again. It’s hard to pull yourself together after this. First to offer your condolences, and then move on with the conversation. Try not to compare stories or use this as a tool for support because again, it leaves a big sting that often continues long after you have gone home.

HOW WAS CHEMO (insert public place)…?

I’m so lucky that my friends ask me every day without fail “how are you?” But sometimes that question comes in the middle of a public place or even a birthday party, when we are surrounded by other mothers who don’t know me. Sometimes I like to pretend that there are people left in the world who don’t know me as ‘Lyndsey with cancer’. It’s easier these days, now that I don’t wear headscarves and have some hair back (I think I may have been kidding myself before that). Despite this, it’s hard when these questions come and I want to share with you, but don’t want to share it with the school mum standing beside you that was part of our conversation 2 minutes prior. She doesn’t really want to know that I spent the night vomiting or that I need to change meds. And I don’t want her to know either. Because I just want to feel normal and enjoy watching my girl have fun at the party! It’s often hard to find a way to tell you that I really don’t want to talk about it right now without hurting your feelings. Try to keep cancer chat for when it’s just you and me.

I KNOW IT DOESN’T COMPARE……

If I had a dollar for every time someone said this to me, I would be a millionaire. It’s driving me CRAZY! So many of my friends, in a beautiful effort to shield and protect me from more pain and hurt, have felt the need to hide their own troubles and pain. Or brush over an issue and say the dreaded words ’it doesn’t compare to what you’re going through’. Dear Reader, I know what your thinking when you say this. Something along the lines of ‘how the heck can I whinge about my ingrown toenail when Lyndsey is dying…’. And I get it. But all I hear and feel is you taking away my ability to still be a friend. Let’s not forget that cancer stole so very much! But one of the things it can’t and will never take, is my capacity to be a friend and provide love, support and advice. And here you are taking that away from me?! I can very easily compartmentalise and separate my cancer from your issues and problems. And I care very deeply about your ingrown toenail. When your telling me about it, trust me when I say that I am in no way thinking ’oh my god get over it my life is so much worse’. The only thoughts that run through my head in these moments are about you and how I can help. I have lots of empathy to give and have been known to come up with pretty good solutions to even the smallest of issues. In fact, when you treat me like a normal friend and we are sharing life’s normal ups and downs you’re doing me a big favour, because my cancer disappears for a second and I’m just Lyndsey again, thinking about your toes. But the minute those words come out of your mouth, its back and you have reminded me that yes, what I am going through is probably so much worse. Dear Reader, please never forget that just because I have cancer, the things that hurt or affect you suddenly don’t matter anymore, that you don’t matter anymore. Because then our friendship is all about me, and not really a friendship at all. Strong friendships are reciprocal. I’m not going to lie and say that sometimes some things you share don’t sting. It does happen, but mostly with the good stuff, like when my friend Krystal recently brought my Godson into the world. I was part of the whole journey, from the very first scan to the moment he entered this world, because seeing a baby being born was a very big thing on my bucket list. I feel the loss of not being able to have another baby very deeply and I know many were worried that I wouldn’t cope with being such a close part of this experience. But I could both grieve for my loss and be so incredibly happy for my amazing friend at the same time, and at no time did that grief ever outweigh the joy that the whole journey brought me. My life is full of what I like to call these ‘double bangas’, but it is my hope, Dear Reader, that you will let me choose what I can and cannot face.

EVERYTHING HAPPENS FOR A REASON…..

Nope, it doesn’t. And I increasingly HATE this statement, yet use it myself. Often. I catch myself saying it mid sentence all the time. Just the other day I was sitting in the car with a friend while our girls danced. We were chatting about the devastating loss of her baby all too recently. The words just came out of my mouth because I had nothing to say that could make it better or fix it. I would have given anything to take her pain away in that moment so this ‘ol faithful came out and brushed it off. It excuses or rationalises the shittiness, suggesting that some good might come out of it. The truth is though, most things don’t happen for any reason at all. She is not a better person and didn’t learn anything because her baby died. It will never make sense nor should it. It’s the same with cancer and all tragedy really. It destroys lives. Even if I did get cancer for a reason, what reason could there possibly be that’s good enough to make it okay? Sure, through cancer I have found good, so much good. More than I could ever have imagined. But I would trade it all in a heartbeat for good health and the knowledge that I will see my daughter grow. Once I realised what I had said to my friend, we talked about how dumb it was and then we agreed that sometimes, life is shit. It’s shit for no reason at all. I urge you to avoid this statement at all costs.

It is more than worth a read, and if you take nothing else away from both of our blogs, please remember this one thing. Terminal illness cannot be fixed. It can only be carried. There is nothing you can say that will ever lessen my grief or fix the fact that I am going to die and all that this encompasses. I hear you asking, Dear Reader, what can I do then? The answer is simple, yet possibly one of the hardest things one can do, walk with me on this journey. As Tim so eloquently says “note that I said with you, not for you. For implies that you’re going to do something. But to stand with your loved one, to suffer with them, to listen to them, to do everything but something is incredibly powerful. There is no greater act than acknowledgment. And acknowledgment requires no training, no special skills, no expertise. It only requires the willingness to be present with a wounded soul, and to stay present, as long as is necessary”.

Like I said at the very beginning of this long (sorry!) post, it is my sincerest hope that you don’t read this and analyze our relationship or interactions. I am overly guilty of doing every single one of these things and probably more. As I read back over this list I can’t help but be relieved again that I am the one that has the terminal illness and not you Dear Reader.It’s a minefield! I would detonate a thousand of those mines as I bumbled my way along trying to support you. Thank you, thank you for always having the best intentions and for trying so hard to fill my life with happiness and rainbows. It is because of this that I feel safe to share these thoughts that hopefully will help others on their journey. I don’t need the help, for I know you have got my back.

Close your eyes and take a second to imagine your child at age 21. All grown up, able to drive, drink alcohol, fall in love, travel, get married, have a baby…live. Imagine the role you will play as their loving parent, whilst they grow and face some of life’s biggest moments, joys and hurdles. The advice and guidance you will give, the epic battles and storm outs and the bond you will create with this most precious treasure. The hope that you will be best friends and share the world. As a parent, you don’t expect that this will not be your reality when your baby is first placed in your arms. You take for granted the moments you have to teach and shape and nurture. As I look at my precious treasure, who at this very moment lies beside me at the tender age of 6, I feel my heart aching with a tangible heart ache – because I will not get this opportunity. Cancer stole it from me. Waltzed in like the worst nightmare possible and stole every hope I ever had as a mother. And I want to scream. I want to scream at the epic loss that we all face, and at the thought that someone will most likely (and hopefully) take my place.

I recently asked my psychologist if he thought I had depression. I mean it makes sense really, how one could easily become depressed as cancer all consumes. I was shocked to hear him most confidently tell me I do not. “You are grieving” he said. Grieving for the loss I have already faced and will continue to face on a daily basis, and of course the loss of that which I know I will never get to see, do or be. This pales in comparison though, to what I know Nyah will face her whole life as she walks her path without her mummy. So, I am on a mission. A mission that sees me put aside my own grief and heartache so that I may somehow make it even the smallest bit okay. So that for every milestone, special moment and hurdle she meets in this blessed life, she has some part of me to share in that. So that she will somehow know and feel the depth of my love for as long as possible. So that I can still be her mummy, and give her advice, encouragement and support from the rainbows. So that that she will never forget me.

I’m not entirely sure how it all came to pass, this epic mission of mine. When I was first diagnosed and in hospital, I received so many amazing gifts from my nearest and dearest that included recordable stories, keepsakes for Nyah, writing paper, memory journals, etc. My cousin even organised a huge box from Hallmark that had hundreds of dollars worth of beautiful cards inside. One for each of Nyah’s birthdays and more. As I look back, I can’t help but think that my incredible friends and family already knew this would be my kind of mission, even before I did. They knew that I wouldn’t be one to just sit around. That I’d try to have things as organised as I possibly could. And so, it began. Small at first, a few things I picked up here and there with the intention of wrapping it up with a birthday card holding words of love for Nyah. But, as things so often do in my life, my mission pretty soon grew bigger, and bigger and then gigantic. If you haven’t already guessed, I’m an all-in type of gal and so if I was going to do this, I was always going to end up doing it to the very best of my ability and to the very edge of my limits (right down to the coordinating wrapping). I collected gifts and procrastinated for quite a long time before actually starting, putting off the moment I would write my first card by doing everything and anything on my long list of ‘things to do before I die’. I filled out memory journals and ‘About Me’ books, recording for Nyah as many details of my life as I could. I scrapbooked, created photo albums, worked on her baby books and lots more, and this in itself felt like such an achievement. All those little conversations I had with my mum about her life and childhood, her family, memories triggered by something random, have always been cherished by me. I ache at the thought that Nyah and I won’t share in this as I randomly recall something crazy or funny about my life, (most likely insignificant, but a part of who I am none the less). I tried to jam as much as I could into these memory books so that Nyah won’t miss out on the edges of me. I also keep a journal for her each day, filled with photos, memories and bits and bobs that I have collected. Usually only the happy, loving moments (I neglected to write about the 5 minute tantrum she just had because I wouldn’t allow her a listening story before bed)! Still though, always at the back of my mind was Mission Nyah which had become so very important. I desperately searched for a place to start, terrified at the thought of leaving before I could achieve my goal.

I clearly remember the night I laid everything out on the lounge, sorting all the gifts into ages with matching cards, then realising just how big this mission was and what it would cost me in terms of my own grief. Realising that I was basically aiming to parent my child up to the age of 21 and beyond with just a few cards and gifts was incredibly overwhelming. Despite this heaviness, it was also exciting. I had purpose and drive again after loosing so much of this when I lost my job. Another reason to fight for more time. I made myself a promise; one card/gift per night, breaking it down just enough so that I could start. I made lists of all the key moments, milestones, hurdles and times I needed my mum and planned out how I could offer my own advice and guidance for those. Things like love, bullying, friendships, boys, loving yourself, work, etc. I selected gifts that were meaningful to me as a child, reflected what I know of her little soul now and also represented special memories for us and our family. I organised and wrapped a lot of my own special pieces of jewellery and keepsakes, and used some of the money that was fundraised for us to help finance the whole affair. I wish I could share more with you about what’s actually inside Nyah’s gifts. I feel your curiosity Dear Reader. I want to share with you. Truly I do, because so many of you have helped me and without you a lot would never have been possible. But I know, one day soon Nyah will read this blog post (Hi honey, I love you!) and I don’t want to spoil her surprises.

Writing my first card was excruciating. One of the worst emotional pains one could ever feel. Layer upon layer of heartache as I sat at my dining room table and wrote to my 6 year old daughter who was only just 5. The thought of not seeing her 6th birthday and of her not having me there, the unfairness of it all, picturing her reading the card, was I giving her the right advice? Would she like her gifts? How could there ever be adequate words to express my love? etc….. endless layers. I sobbed the whole time and it took me about 3 hours. I’d like to say that it has gotten easier, but that would be a huge lie. Each birthday card has proven to be just as hard as the next, and over the last few months, most nights after Nyah has drifted off into sweet dreams, I have faced the unavoidable grief that is tied to this big act of love. The longest card has been well over 10 pages and about 5 hours worth of effort as I wrote to her about her (hopefully) impending motherhood. So many things I wanted her to know about how I felt about my own journey as a mother, the things I learnt, helpful advice, support and encouragement; I couldn’t bear to miss a thing. It is the hardest thing I have ever had to do in my life and each card contains a little piece of my heart that has broken off and been wrapped inside in the process. Each card that I finish and pack neatly away in her pink box brings a sense of relief. I know that these words and gifts will make such a difference to her journey without her mum. Not that I really think I could ever parent my child after I die, or that the daughter magnet will be her most prized possession, but she will be reminded that she is loved by her mummy, and that makes it so worth it. A thousand times over it’s worth it.

A well intentioned friend recently posed the questions, “what if she doesn’t like the gifts?” and “what are you going to do when she is 9 and sits there and opens them all at once?” Ouch. Like I said, well intentioned though not necessarily tactful. However, she does have a point and this is definitely something that has caused me a lot of angst. The second question was an easy fix. I admit, I have threatened Ben within an inch of his life. He wouldn’t be so silly as to let her open any gift early for fear of making it on my ‘shit list’. Yes Dear Reader, the SHIT LIST. A very real place you do not want to end up. I have big, BIG plans for the people who somehow end up residing there, that mostly start with H and end with AUNTING (not that I would know what that looks like because I’m terrified of scary movies, the last one I watched was The Ring, but I digress). Seriously though, knowing my child this is something she is sure to try, many times. I sure would have! I have enlisted the help of Ben, my parents and friends to make sure this hopefully doesn’t happen. In terms of whether or not she will like the gifts, well the answer to that question is I really don’t know. How could I possibly? I can’t help fall apart as I type that because I so desperately want to know my Nyah Joy. I would give anything to know if the colour of the keyring I picked out will be her favourite still at age 16, or if she will choose to wear gold or silver, etc. So many questions that, like I said, you take for granted as a parent. I think I may have driven myself half insane with worry about whether or not she will like, use and appreciate what I have selected. I’ve tried hard to find things that are meaningful, sentimental and timeless and have had to accept the fact that I have done the very best I possibly could and that is enough. I can’t make it perfect or fix it entirely, because the only way to do that would be to be here to select her 21st birthday gift in the weeks actually leading up to her 21st birthday. I just pray that one day she knows how much love, time and effort went into the smallest of details.

I often wonder why I’ve been given this time from a spiritual perspective. I used to find myself longing for the time when I was just ‘finished’. And then I could sit and do nothing. You know, like a normal person. Watch some TV at a normal time or something, rather than at 4am when I finally crawl into bed at night. Each time I was admitted to hospital or walked out from a crappy clinic appointment, I would beg the stars to “please just let me finish”. It didn’t take me long to realise though that this will never actually happen. Pre-cancer this was always my norm too, it just looked a little different as I busied myself with work. I was always doing something; writing lessons, working on portfolios and observations, etc. I have also very quickly realised that there will always be someone to write to, to tell them just how much they mean to me. I struggle a lot with guilt when taking a break from it all, and find it impossible to relax, even when I am smack bang in the middle of a cancer slump and can barely move from my bed. How could I possibly risk not waking up tomorrow and Nyah not having a 17th birthday card/gift from me? It is this that sees me pushing through to get the job done. There are no doctor’s orders for more rest that could ever change that. I also have this huge, terrifying demon of a thought that is currently clinging to my back. What happens when I am actually ‘finished’? Is it time to die then? To lay down and accept my fate. No. No way. I figure, they can’t take me if I’m not finished right?! I realise how ludicrous this sounds and can hear the words I’d say to someone who suggested such a thing, if I weren’t the one trying to rip the demon’s arms from around my neck. Ludicrous yes, but a completely genuine battle for me at the moment. Throughout these dark moments, my superman is, as always, a constant support, coming up to gently rub my shoulders, offer tissues and forever with a cup of comforting tea. He alone knows the depth of my love for our baby and what this act has cost me.

Dear Reader, do you want to know something very exciting?! In September, I actually finished the first part of my mission (its now so big it has parts). I wrapped up Nyah’s last birthday card and gift. I actually did it! Crammed a lifetime of love into 4 pink tubs and now, no matter what happens, Nyah has a card and gifts for each of her birthdays up until age 21, plus her graduation, housewarming, engagement, wedding and pregnancy. The peace and comfort I have found in achieving this goal has been indescribable and I am now onto mission parts 2, 3 and 4. Part 2 is pretty much a repeat of part one for Nyah, just for Christmas. Do you know how hard it is to find 21 different and nice Christmas cards!? Mission parts 3 and 4 are also well underway. Birthday gifts for my gorgeous niece Chloe and nephew Nate. Whilst emotionally not as hard as Nyah’s, these have been tricky in that my little loves are still so young. Though their personalities bloom more and more each day, I’m yet to discover too much about who they will be in the future. What I do know though, is their Daddy (my brother Drew). I have shared much about our wonderful childhood with them and based a lot of their gifts around this. They will also have a little something from me until age 21. Then of course, I’ll move onto my Superman and his future love (hopefully), mum and dad, my beautiful friends….like I said, the list is endless. I have realised recently that I may have developed a slight shopping addiction as a result of this mission. No trip to any shop is a gift opportunity wasted and I haunt all the local gift shops weekly for any new additions. Online shopping and my credit card have become a very dangerous combination at 3am in the morning too. Between you and I, the post lady knows me by name, has somehow concluded that I must be a shift worker and has a lovely relationship with my dogs when she delivers my daily packages!

I cannot finish this blog without a huge heartfelt thank you to every person that has helped me in my quest to leave a lifetime of love. Whether you have purchased gifts, donated money, offered ideas, etc, please know that even the smallest of these acts has had the biggest impact. I cannot find the words to let you know how thankful I am for making the task just that little bit easier, and helping me breathe when sometimes I feel like I am drowning. I often wonder how you know? Know that I’m struggling and then all of a sudden your random message appears and I am reminded of my purpose. In July this year, I actually got to tear up the first card I ever wrote for Nyah’s 6th Birthday. It was a moment I will never forget. I tore up that card into a thousand little pieces, brought her a new one and wrote simple words that explained how excited I was to share her special day with her. And have the most magical, wonderful birthday celebrations we did! I got a little cocky a while back and actually didn’t do a card or gift for this Christmas. I decided to live on the edge and make a bet that I would be here for that too. 10 weeks and counting Dear Reader.

I am super excited to share with you dear reader, this wonderful upcoming event:

BURLESQUE FOR BREAST CANCER is proudly presented by the VA VA VOOM Burlesque Dancers and will be held on the 21st November 2015 at Toronto Workers Club. 100% of all profits raised will be donated directly to the National Breast Cancer Foundation to assist in their mighty research and quest to find a cure for this terrible disease, and support for those with breast cancer. I am honoured to have been asked to guest speak (not burlesque – I repeat, not burlesque!) and will be sharing a bit about life with terminal breast cancer and how real the fight is for all of us as breast cancer touches more and more lives everyday.

So dear reader, I encourage you to grab a bunch of girlfriends (and even fellas!) and join us for some great entertainment, laughs and of course support for a cause close to all of our boobies. Tickets are already on sale and can be purchased directly from the club on (02) 4959 2011. They are strictly limited and selling fast so be sure to get in quick!

“So…what do you do?” was the question recently asked to me by a lovely young doctor in the Emergency Department. He was trying to figure out where I may have picked up the infection that was making my temperature skyrocket. I just sat there for a second, with what must have been a very blank look on my face. I recall running over my days and then answering, “I have cancer.” He looked confused and then prompted further, “yeah…but what do you do?” Again, I did a quick assessment of my past months and replied, “nothing. I just have cancer.”That’s the thing about cancer.It strips you bare. Steals everything you are, everything you thought you were, and everything you loved to do, leaving you one-dimensional. “Don’t forget you play bingo,” piped up Ben, ever my champion. “And I’m a mum. I have a 5 year old,” I added. We quickly agreed that there lay the most likely source of the infection, probably something she’d collected from school, but I could tell he was still quite intrigued. “So what do you do during the day?” he asked. I explained how I spend my days; writing cards and organising gifts for my girl and family for when I’m gone. He was very obviously affected by this which shocked me. I mean, you just assume doctors (and nurses) become somewhat ‘superhuman’ after seeing such tragedy every single day. But he actually came back again, moving way past his job description, to have a chat about what I was leaving for her. He wanted me to know how wonderful he thought it was.

I can tell you who I was before the Big C. That’s almost too easy. I was Lyndsey, and that was something very multidimensional. One of my most defining roles was who I was in my job. I studied for six years to earn my Bachelor of Teaching (Early Childhood) degree, and relished in the label of ‘teacher’. I worked my butt off to get good marks, even when Nyah came along half way through, and graduated with honours. I remember in the early days after graduation, I arrogantly searched for any and every opportunity to tell the world who I was. If you were serving me in the shops, chances were that somehow by the time we finished our transaction, you’d know I was a teacher. I actually can’t remember a time when I didn’t want to work with children. I was always smitten by baby cousins, organised all the kids at parties, and shamefully played with my special Baby Born ‘Kimberly’ until I was about sixteen. I also don’t think there was anyone more excited than me to get that electronic baby thing they had at high school, where you get to practice and learn how hard it is to have a baby. Me? I went back for seconds. I started my first proper babysitting job at fourteen, and the rest they say, is history.

Even though I was qualified to teach up to Year 6, I found that my passion was for Early Childhood. Oh boy did I love those little ones! I hit the absolute jackpot and started work at a small community preschool in 2012. (Mostly) school hours, paid school holidays, community driven – it didn’t get any better than that for me and our little family. Until, in October of that year, I was handed the directors role at age 25. I don’t think I actually realised how big of a deal it was at the time, to be running a business, managing a team of 8, keeping 38 little lives a day happy and safe, and actually teaching them things in the process. On reflection, I often wonder what the heck I and the wonderful people who hired me were thinking! Especially when poop hit the fan and the support that I was supposed to have when transitioning into the role was there one day, and quite literally gone the next. I didn’t even know the codes to get into online banking to pay everyone! That’s the thing about me though. One of the things that’s at the core of what it is to be Lyndsey. Something that cancer will never take. I. Never. Give. Up. I regularly annoy myself with this trait! With the support and help of my amazing family, team, and bucket loads of hard work, we managed to transform that preschool into something even more special than it already was – and I am extremely proud of what we achieved.

At the time of my diagnosis, everything at work was ticking along nicely. We had just been assessed and given a big high-five, and I had the best of both worlds. Nyah came to preschool with me, so whilst I worked my butt off pulling long hours and nights, I was still able to be the mum I wanted to be. To say it was a dream job is an understatement, and the list of things I loved about it is endless. How wonderful it was to turn up to work every day and be greeted by the infectious innocence and happiness of childhood. Having a bad day was never possible because of the little hugs and ‘I love you’s’ that greeted me at the door every morning. Knowing that I was making a difference, sometimes not only for the child but for the whole family, gave me purpose. Part of my philosophy was to treat every child as though they were my own, because I wanted to be deserving of the privilege of helping someone’s most precious treasure grow and learn. I strived to deserve the trust families placed in me. It was a big responsibility and honour, and in applying this everyday, I made wonderful relationships with little and big souls along the way. I have no doubt I would have worked happily until retirement in this little piece of heaven.

I bet you can guess what comes next. It seems like my life had hit a level of epic happiness. I’d reached the top of the mountain and fell hard when cancer stole my job. I remember the girls coming to visit me in hospital a few weeks after my diagnosis, and telling them I wouldn’t be coming back to work. I remember the sting of realising just how much I’d miss seeing them every day; these amazing, talented, professional, caring, loving women who had become part of my family. We were so lucky that my second-in-charge, Robyn, was able to step up and take my place seamlessly, but boy was it hard to let go. I remember lying awake for hours upon hours stressing about everything I knew needed to be done and wanting so desperately to just go and do it. One tough night, just after I came home from hospital, I laid awake at 4am constructing an elaborate plan of how I was going to get back to work. I had it all planned out, down to the smallest detail, and it made so such sense. Until about 6am, when all of a sudden it didn’t make a shred of sense and I wondered what the hell I’d been thinking. That day, I wrote my emotional letter of resignation that took me weeks and weeks to actually send. At that point, I couldn’t have hated the world more. And Robyn, though you never knew (or maybe you did), there were moments when I wasn’t your biggest fan. Sometimes I was so mad at you. I couldn’t help but ignore your calls. Even though you asked for none of it, the jealousy I felt at knowing you had my job was overwhelming. However, the one thing that made it easier to leave was knowing that all would be okay in your very capable hands.

The day I cleaned out my locker and desk, I felt like a part of me was gone. The emptiness was indescribable. That’s the thing about being part of such a little amazing community though. Although though I never returned to work, and sent many dark thoughts her way, Robyn, my committee of ‘bosses’, the girls, and all the families refused to let me go. They went above and beyond to soften the blow and keep me close. I received gifts, flowers, photos, drawings and cards whilst in hospital, that decorated my walls and brightened my days. The girls worked tirelessly to raise money for my little family and helped purchase all the special gifts they knew I was collecting for Nyah. The amount of emotional and financial support that came from such a small community was unbelievable. I have been loved and known love in so many new and different ways this past year, and as ridiculous as it sounds, I am thankful to cancer for bringing me this. Cancer has showed me time and again the capacity we have as friends and strangers to change the life of another. It is deeper and more profound than I could ever have fathomed.

Eventually though, life goes on, and Robyn no longer needs to call me for advice. She is moving her own mountains as a leader, bigger ones than I ever attempted to tackle. New families that never met Mrs Clark are coming through, and a new team becomes a family. I have realised that the sting of this will never go away and that’s okay. I let myself cry and feel sad about it because it simply just sucks. There’s a big part of me though, that’s relieved at not having to work. Cancer has changed me so completely, adding fatigue and stripping away my patience. I’m not sure I would be the same Mrs Clark now anyway.

Aside from my job, I loved to craft, crochet, shop, sing, cook and be a mum. I was a very active mum, always doing something or other with my little Joy. Our favourite thing to do in the afternoons after work/school was get down on the floor and just play and imagine. I am now a shell of the Mummy that I was. I physically can’t get down on the floor to play anymore, or run around or dance. My cocktail of pain meds in combination with the cancer also makes me bone achingly tired. I find it hard to loose myself in our fantasy world like I used to. These days, the time Nyah and I spend together is usually well thought out by me in advance to ensure that she is kept busy and not noticing my failures as a mummy. We have a very, very busy schedule; ballet, jazz, swimming and gymnastics, because somehow, this is easier than being at home and sitting with the sting of what I can no longer do. Nyah also watches way more TV than what I am comfortable with so I can rest. Resting. Always resting. It’s a total cop out I know. Though I struggled to write that, I know it to be the truth. I wonder often how many other mums, facing the same journey, have experienced this too.

Sometimes, I am so overwhelmed by just how much Nyah’s life has been changed by the Big C. She has had to face far too much reality for one so young, and it gets heavier every day. I often find myself thinking it would have been easier on her if I had of gone when she was younger and had less of an understanding. Maybe her heartbreak would have been easier to repair? It seems that as she grows older, she understands more deeply and faces the pain alongside me. She’s always there by my side, holding my hand and telling me, “I don’t want you to go.” She has started to have panic attacks about what life will be like when I am gone, her first on the night of her sixth birthday. It doesn’t matter what I say about how much our love will linger, about how she can always talk to me in her heart. She remains focused on the fact that she won’t be able to hear me, see me or touch me and wants answers. She wants to know who will read her bed time stories, put on her band-aids and give her hugs. Though she loves her amazing Daddy, she isn’t happy when I suggest that it will be he that takes my place. It was an earth shattering moment when Ben and I realised that these complex and layered thoughts that were bursting out of her, were obviously something that she’d been hiding for some time. I wonder when she developed the need to protect me? Thankfully, she is getting some help and we talk and cry often when she needs to get it out. I ache. I ache so badly every moment of every day that I cannot change our story, and at how ill equipped I am to protect her from the pain that has already started.

These days, as I mentioned earlier, I spend most of my time wrapping up my life and organising things for after I’m gone (more on this later). When cancer first took Lyndsey, it was a terrible thing to have nothing left to do except make sure everyone else would be okay after you died. Like living to die. After my diagnosis, I was completely defined by my disease and throughout those first months found the very bottom of myself. One thing I was shocked to discover was that I actually liked pre Big C Lyndsey. I never really thought too much of her, always striving to be something better. It wasn’t until cancer forced me to redefine who I was that I realised that pre Big C Lyndsey was enough. She actually had some pretty good things going on. Now, my fight to define myself as something other than cancer continues. This new Lyndsey, well I’m not sure she is very interesting yet but I quite like who she is. I like to colour, read, tie dye, write, go to the theatre, go on holidays, spend time with friends and family, eat out a restaurants, watch trashy movies and TV, and on Wednesdays I bingo.

I now focus more on the core qualities that make me who I am, rather than the roles I play, because I have come to realise that cancer will never be able to steal them. These qualities have been built on what I’ve learned from and seen in others. I want to be like so many people who have loved me big, and I want that for Nyah too. I also find myself not worried about the way I look, and sometimes thinking, “you look pretty today.” Looking pretty when you are bald and swollen means something a whole lot different to looking pretty before. I never, ever would have allowed myself to have these thoughts pre Big C. And of course, I have come to realise that being a mother will always be my most important and defining role. It doesn’t matter how it looks as we fight to maintain a normal mother/daughter bond and life, just that we did, we are, and we loved big.Cancer can take my job, my body, and most likely my mind in the end too, but it will never take the very core of my soul. I know that will linger long after I am riding the rainbows.

Where does one start when sharing their journey with terminal cancer? Is there even a start, a moment where it all began? Or is it just a jumble of moments that somehow ended up landing me here, epically broken and dying.

Let’s begin with introductions.

This is me.

Nope actually I lie. That was me. The old Lyndsey, before I was diagnosed on the 8th August 2014 with Stage IV Breast Cancer. Stage IV, Metastatic Breast Cancer to be precise. For those of you that don’t know, once that small seemingly harmless word ‘metastatic’ is thrown in there, things become terminally bad. Basically, it means the cancer has spread through my blood to my liver and mostly likely other places that the CT’s can’t find yet.

This is me now.

This is Ben, my husband and own personal Superman. We have been madly in love for 8 years now and just celebrated 3 years of marriage on the 4th August. He is the best person to ever walk the face of the earth. More on him another day though.

This is Nyah. Our beautiful, intelligent, kind, confident little princess. We celebrated her 6th birthday in July, and the loss of her very first baby tooth 3 days later. She is my miracle and the very best thing in my life.

This is my Dad, Peter; Mum, Lynda; Brother, Drew; Sister in-Law, Amy; Niece, Chloe; and my new, little, squishy Nephew, Nate. They have all played a huge part in my journey. Cancer doesn’t just affect the patient, it’s a whole family affair. Sometimes I feel lucky that its not me having to watch and help my loved one slowly fade. I couldn’t possibly imagine how hard it is for them to face normal life and their own heartache and pain, all the while supporting me (which I will readily admit is not easy). They sure do a bang-up job.

So that’s us, the Clarks. We live in a teensy house that I adore and have four fur babies; Bunny (Sissy Pie), Peppa Pig, Princess Twilight Sparkle and Noelle.We live everyday with big love for each other.

Pre-Cancer, we were a pretty normal family. Ben and I both worked full time which allowed us to live comfortably and give Nyah everything she needed (and wanted!). Life was good – great actually. We were two of those rare people that felt like we had everything reasonably together. And then, all of a sudden, we didn’t.

You could say that my journey with cancer started with anxiety. Around Christmas 2013 I began to have weird dreams about cancer, more particularly, my Dad getting cancer. It began to get so regular and real that it made me really anxious. One night, my 2 best friends (Kirra and Krystal) and I were snuggled in bed having a mummy moment while our girls played. I admitted that I was battling with these thoughts and scenarios that kept popping up more and more, and was considering seeing my GP for some meds to help. I remember saying, “Someone I know has cancer. Someone close to me”. True story.

In June 2014, we went on cruise to New Caledonia with Kirra, her husband Ben, and their daughter and Nyah’s best friend, Indi. We had such a wonderful time but towards the end of the cruise I started to feel yucky. Thinking it was sea sickness, I didn’t worry too much about it. When we got home though, I couldn’t seem to shake the mystery illness. It was hard for me to leave my bed and soon progressed to intense stomach pain that took me to hospital. I ended up being in and out of hospital for almost a month and never returned to work. The doctors assumed my illness was some sort of infectious disease that I picked up on one of the islands, and that as soon as the pain meds kicked in and I felt better they’d declared me cured and send me home. Often I’d return hours later even worse. I had lots of different diagnoses over those few weeks including pneumonia and an infected spleen. It wasn’t until my second CT scan that things took a turn for the worse. They found some suspicious looking ‘lesions’ in my liver and investigated them further through a liver biopsy. This will forever be the worst experience of my life. They couldn’t knock me out because I was too sick to have the anesthetic. I had to lay there whilst they inserted a mammoth needle through my back, into my liver and then cut off 2 sections. Trust me, it was even worse than it sounds. I spent my second wedding anniversary in hospital and only just made it to Nyah’s 5th Birthday and party by discharging myself. Within the month I lost the ability to eat, walk, toilet and shower independently, and be a mum. I was pretty much a vegetable. Those that know how fiercely independent I am will understand when I say I will never, EVER, be able to take away the memory and shame of my husband having to wipe my ass. Ever.

I don’t remember much about the night I got told I had cancer. My whole family was there visiting, but I was dosed up and in pain. I remember the doctor coming in, then getting the most intense feeling of fear. So much so that I turned to my Mum and asked her to hold my hand. Somehow part of me knew it was bad. The initial diagnosis was Secondary Liver Cancer with no real clue as to where the primary cancer lie. Liver failure, lung collapse, pneumonia, fevers and lots more were added to the growing list of problems I was facing. Everyone tells me that we didn’t find out it was terminal cancer that night, but I don’t actually remember there being a time when I felt hope. Like I said, I knew from the start it was bad. I remember being devastated that my brother had been there to hear the news, and wanting to protect him from the pain and hurt.

The next day, my Oncologist, who worked at another local hospital, came to see me and offered me chemotherapy treatment. She has since told me that she was the only one in the team of doctors at both hospitals that was willing to give me a chance and offer me treatment. I was just too sick. Whilst I understand the need to not waste resources and hospital space, it’s scary to think how many people have lost out on precious time because that time was deemed too expensive or a waste. I’m not sure why she decided I was different, but I thank God everyday that she did. I owe her my life.

I was transferred to her hospital that night in a very bad way. I had turned a beautiful shade of yellow as my liver continued to fail. Mum stayed with me so Ben could spend a rare night with Nyah, and he and Dad didn’t expect that they would return to find me in the land of living. That night though, after deciding to go ahead with treatment, I started steroids which had an immediate effect. I remember the look of shock on both of their faces as they arrived in the morning to find me sitting up, semi-coherent. I was even able to eat some real food!

Over the next few days I had battery of tests. I remember breaking completely at one point and screaming over and over as they again pressed and prodded my balloon of a stomach. Not one of my finest moments, but petrified doesn’t even begin to explain how scary it was to go in and out of these huge machines, hold my breath with a collapsed lung, and simply lay flat with the pain. Valium quickly became my best friend. Sometime in this period, the doctors confirmed it was terminal cancer and that it most likely originated in the breast. Such anger I remember feeling upon hearing this. How could I have breast cancer? I did everything right! I breastfed my daughter for 13 months, checked my jugs regularly, and never did drugs. The only small things you could say I did wrong, if you were being picky, were; I carried my phone in my bra everyday, consumed lots of artificial sugar in the form of diet drinks, and am over weight, yo yo-ing my whole life. My Oncologist is pretty sure though that I’m just a freak of nature. One of those rare cases that happens to someone on the news, not to you or someone you know. We will never know why, which is awful because I so desperately want to know why so that I can stop Nyah from meeting the same end. What’s scary is that they are pretty sure I have had it for quite some time. It makes you really wonder what hope any of us girls have in battling this silent killer or ever finding a cure, if the first you know of it, you’re already almost dead. I struggle everyday with the thought that somewhere in the world, right now, there is a Mum hearing the exact same news that I heard, facing the thought of leaving her baby, and that I am utterly powerless to fix it. I wish I could be enough and it ended with me.

I stayed for about 3 weeks in hospital. Between Ben and my Mum, I never spent a single second alone, even when I was moved out on to the ward. I think the nurses quickly realised there was no point asking Ben to leave, even though he technically wasn’t allowed to stay on the ward. His big bum wasn’t going anywhere. I started the chemotherapy in little baby doses and things continued to slowly improve, though I was still struggling with walking, showering, toileting, etc – basically being a human.

I remember one pivotal night a lovely nurse gave me a verbal kick up the butt. She knew a friend of mine and talked to me about how important it was to not give up and that I still had control over how this bastard of a disease was going to take me. I hadn’t given up. That word has never and will never been in my vocabulary, but I think I had resigned myself to the fact that I was going to die pretty soon and was just waiting. Her encouragement and support gave me some drive, and the next day I got up. I began to use the walker, tried harder to eat more and regain some independence. Each day I got stronger and needed less breakthrough pain medication, had more energy, ate more and was rejoining the land of the living. I remember the day they suggested I might be able to go home. Everyone went into overdrive. Dad and Mum blew into the hospital like a hurricane making plans and then dashing around to set up a hospital bed and equipment at their house. We decided it would be best if we lived with them so that they could help with Nyah, I would never have to be alone, and Ben could continue to work. The feeling of going home after such a long time in hospital, and never thinking I’d sit in a car or see my fur babies again, was indescribable. That night Nyah and I fell asleep snuggled on the lounge, and though we weren’t able to share a bed, Ben and I were close.

A couple of nights after I came home, Ben took Nyah out on a ‘daddy daughter date’, and I had my first panic attack. I remember falling asleep and having terrible dreams about what life was going to be like for Nyah and Ben once I was gone. I remember pleading with my Mum and Dad to help me find more time so that I could make it okay, then watching them fall apart at not being able to take it away. Valium was still my best friend at this stage. That and my amazing husband and friends who I’m sure made the effort to stay awake all night, just so I had someone to talk to at 3am when I was falling apart. Night time was beyond hard, when all in the world except my brain was quiet.

After a few days of being home, Ben took me back to our house to grab a few things. It was the weirdest experience. In all the chaos, he hadn’t been back to tidy or organise and everything was frozen in time. We still had Nyah’s birthday gifts and party goodies on the lounge. It was almost as if she could walk in the door and everything be normal again. The sadness hit both of us like a ton of bricks; how much we had lost and how nothing would ever be the same again. We tidied, organised and packed, and didn’t go back for a long time.

Over the next few weeks I continued to improve. It seemed like chemotherapy was actually working pretty well for me, and soon I was able to walk short distances without the walker, shower and dress myself, and even toilet independently. I remember sobbing with joy the day I was finally able to wipe my own butt. It was a pretty big deal. We were still working on a time frame of weeks but I was starting to hope that I’d make Christmas. My Oncologist was always very honest with me, letting me know that things could change in a heartbeat, and that I’d already defied all the odds. I remember thinking, “just let me have one more Christmas”, my favourite holiday. I really obsessed over the little things I was going to miss, like the loss of Nyah’s first tooth, Nyah riding without training wheels, her first day at school, receiving Mother’s Day stall gifts – all these little details that make up a life. And then somehow it was Christmas, and then her first day of school, my Birthday and then even better her birthday. I have seen her lose her first tooth, had the most incredible Mother’s Day (she brought me the most useless but treasured gift from her school stall), met many new little lives I thought I’d never know, including my new baby nephew, and made memories on many small holidays. I’ve seen amazing shows, movies and TV series I thought I’d miss, and because of my amazing husband, family and friends, pretty much ticked everything off my bucket list. We were even able to move back to our house and I started to drive short distances again. Somehow I made it and am now chasing that second ‘last’ Christmas. These days, we live and count every second and moment in an effort to capture and appreciate everything. It sounds fun, but really it sucks. I forget what it feels like to just enjoy and live in a moment. I’m always thinking about getting a photo, writing it down, or whether or not it will be the last. I’ll take it though. A thousand times over.

Throughout my time in hospital, Nyah was an absolute superstar. She was shipped from pillar-to-post every day thanks to my amazing friends and family who stepped up and did everything they possibly could to keep her life ‘normal’, trying to fill my place. She was loved so big at preschool, by my Mum and Dad, Brother and Sister-in-law and friends. Kirra even went out and brought Nyah a whole wardrobe for her house, so that Nyah could stay whenever she needed. Every night, Nyah would make the trek up to the hospital to see me bringing with her big smiles and love (although it could easily be said her biggest motivator was the custards and jelly she knew I kept for her). We tried to spend quality time together in those moments, crafting, reading, talking; but it was never enough for me. I was and still am a shell of the mother I was, that I prided myself in being, and that I loved being more than anything else in the world. Some nights, I couldn’t even stay awake long enough to say goodbye. I will never forget the day Ben and I sat her down and explained to her what was going on, and that soon I would be going to heaven. She knew exactly what it meant. Oh god did she know. My heart broke into a thousand shatters at the sheer thought of a little 5 year old heart having to face such a loss. As her mummy, my most important job is to protect her, yet here I am causing her the worst pain one could ever imagine. I can never protect her from this, and these thoughts are something that still bring me to my knees every single day.

Fast forward almost a year and I’m still here. None of us really know how. I think I’ve started to become a bit of a pain in the backside for my Oncologist. She has had to change up my chemo a few times, but has nothing to base her levels and amounts on because no one else has made it this far. I’m now on my fourth type of chemotherapy, and a few months ago she gave me permission to hope for a year. Hearing those words come out of her mouth was amazing yet exhausting. I’m so proud to think that I’ve managed to swap the word ‘days’ for ‘who actually knows?’. It’s exhausting though, because living with terminal cancer is hard work. Everyday my body seems to break down more. I struggle daily with fatigue, pain and swelling, high blood pressure, and now diabetes (which has been triggered by long term steroid use). I don’t know what its like anymore to get a full nights sleep and actually feel energised, or not have some part of my body hurt. I’m going to toot my own horn a bit and agree with my hubby who likes to say I make this “shit look easy”. Although I no longer work, and need a daily nap, I still function pretty much like a normal person – getting Nyah to and from school, busy with lots through the day, cooking dinner most nights, etc. You will rarely find me standing still or resting unless I’m forced to. I try hard to not let cancer take any more of my life than what it has, which I can assure you is a lot. Sometimes though, I feel like I’m not strong enough. But then I remember who is watching, and that it’s all for her. Nyah deserves to have a proper mum and I’m determined to give her that for as long as I can. I’m not the biggest fan of the word fighter because what does that then mean when I go? Does that mean I wasn’t strong enough or didn’t fight enough? – because I can assure you that will never be the case.

So there you go dear reader, a hugely long first blog with so much more to share. I don’t promise it will always be well written, or even worth reading for that matter, but what I can promise you is that I will be honest, and maybe change the way you offer support to someone you know with cancer. Or maybe you have cancer yourself and can relate. Sometimes it’s nice to know you’re not alone.